Deinstitutionalization is Not Mandated by the DD Act
Deinstitutionalization Is Not Mandated
by the Developmental Disabilities Assistance and Bill of Rights Act
QUESTIONS PRESENTED
- Does the DD Act mandate transfers of individuals from large residential facilities?
- Are P&A systems permitted to advocate for admitting individuals to facilities upon determination of need and eligibility, and at the request of the individual and/or his family/guardian?
SUMMARY RESPONSE
- The DD Act does not mandate transfers from facilities without regard to the needs and choices of the individual.
- P&A systems are authorized to advocate for admitting individuals to facilities upon determination of need, eligibility and choice.
RATIONALE AND AUTHORITY
I. The Developmental Disabilities Assistance and Bill of Rights Act
A. CONGRESSIONAL INTENT
Source: House Energy and Commerce Report No. 103-378, Nov. 18, 1993, pages 7-8 (to accompany H.R. 3505, Developmental Disabilities Assistance and Bill of Rights Act Amendments of 1993, Section-by-Section Analysis, Section 3, adding Purposes and Policies to Findings).
“The Committee recognizes that, with the appropriate resources and support, many individuals with developmental disabilities will live lives that are fully integrated into their respective communities. This potential, however, should not be seen as limiting the choice of individuals and their parents to seek living arrangements that are most suitable to their needs and wishes, whether they be in the community or in institutions.
“The Committee has heard from many parents of individuals with developmental disabilities who reside in large institutional facilities. Among the concerns expressed by these parents is that the goal of independent, community-based living for some individuals not be seen as a mandate for all individuals with disabilities. The Committee recognizes and supports the belief that each individual and each respective family have different goals and needs. The Findings, Purposes, and Policies of this Act should in no way be read to support one kind of residential placement over another.
“Furthermore, the Committee would caution that goals expressed in this Act to promote the greatest possible integration and independence for some individuals with developmental disabilities not be read as a Federal policy support the closure of residential institutions. It would be contrary to Federal intent to use the language or resources of this Act to support such actions, whether in the judicial or legislative system. “
B. SUBTITLE A, GENERAL PROVISIONS
Congressional intent is reflected in statutory language –
1) Findings, Purposes, and Policy of the DD Act (Section 101)
Informed choice (see e.g., Findings (16)(A), Purpose (1)(B), and Policy (2), (3), and (4)).
[Policy (3) Individuals with developmental disabilities and their families are the primary decisionmakers regarding the services and supports such individuals and their families receive, including regarding choosing where the individuals live from available options, and play decisionmaking roles in policies and programs that affect the lives of such individuals and their families.]
The need to improve the quality of community options (see e.g., Findings (5), (11), (12), and (14); Policy (9)).
[Findings (11) many service delivery systems and communities are not prepared to meet the impending needs of the 479,862 adults with developmental disabilities who are living at home with parents who are 60 years old or older and who serve as the primary caregivers of adults].
2) Rights of Individuals with Developmental Disabilities (Section 109)
The rights of individuals with developmental disabilities include opportunity for residential services that are appropriate to need and meet minimum standards. For in need of comprehensive health-related, habilitative, assistive technology or rehabilitative services, standards are at least equivalent to ICFs/MR standards (Section 109(a)(3)(B) and (4)B), see attached).
[Rights of Individuals with Developmental Disabilities (3) The Federal Government and the States both have an obligation to ensure that public funds are provided only to institutional programs, residential programs, and other community programs, including educational programs in which individuals with developmental disabilities participate, that . . . provide treatment, services, and habilitation that are appropriate to the needs of such individuals; and . . . meet minimum standards . . . in the case of residential programs serving individuals in need of comprehensive health-related, habilitative, assistive technology or rehabilitative services, that are at least equivalent to those standards applicable to intermediate care facilities for the mentally retarded . . .]
C. OMISSION OF LANGUAGE MANDATING DEINSTITUTIONALIZATION
Although the DD Act requires progress achieved through “advocacy, capacity building, and system change activities,” with a clear emphasis on community integration and inclusion, no where does it require that these goals must be met by transferring individuals from facilities.
There does not appear to be any references to the term deinstitutionalization” in the DD Act.
There are ways to further the “community integration” goal of the act without putting resources into transferring individuals from facilities, or closing these centers.
“Thousands of nonprofit group homes offer well-supervised programs for the developmentally disabled. But problems exist to some degree in nearly every community, says Curtis Decker, executive director of the National Disability Rights Network (formerly called the National Association of Protection and Advocacy Systems -- NAPAS), a nonprofit group. While Mr. Decker is opposed to people living in institutions, he says that Investigators may overlook flaws in group homes because of a lack of other housing options:” They don't know what to do with these folks if they closed a place down.”
“The number of abuse and neglect cases among the developmentally disabled isn't collected nationwide. Many states don't keep central databases on employees involved in such cases, allowing workers to move from one agency to another. ‘You put people in tough jobs, who are underpaid, not well-trained or supervised, and the potential for abuse is big,’ says Mr. Decker. ‘It's endemic to the country.’” [“Safe Place: Disabled People Find Group Homes Can Be Broken, Too; Patients Gain Independence, But Oversight Is Spotty,” Wall Street Journal, September 13, 2005].
P&A systems’ program goals and the spirit of the DD Act can be furthered through initiatives to –
- Expand community services and supports through advocacy for increased provider rates, release of approved state appropriations, and improved access to health care (e.g., through expansion of the Community Resource Center model);
- Reduce the waiting list; and
- Address quality of community services and supports through, for example, enhanced oversight, direct care worker issues (training, wages, abuse register, etc.), expanded death reviews to include deaths in the community (not just institutions), and expanded review of staff and resident assaults in community settings (not just institutions)
“Build it and they will come” - This focus first, rather than one of deinstitutionalization, accomplishes system change and makes community living a viable option for more people, including people on the waiting list and in facilities.
D. PROTECTION AND ADVOCACY OF INDIVIDUAL RIGHTS
Section 143 (see sidebar) of the DD Act is also devoid of any mention of deinstitutionalization mandate.
P&A systems are set up to advocate for people regardless of where they live, including those living with their parents, independently in the community, in group homes, nursing homes, psychiatric hospitals, and state-run institutions.
II. The Olmstead Decision
Olmstead does not mandate deinstitutionalization. Colleen Miller, Executive Director of the Virginia Office of Protection and Advocacy said it best:
“The Americans with Disabilities Act, like Section 504 of the Rehabilitation Act, requires that people with disabilities receive services in the most integrated setting appropriate to their needs. See 28 C.F.R. §35.130 (ADA Regulations); 28 C.F.R. §41.51 (Section 504 Regulation). The United States Supreme Court has held that the ADA and Section 504 require states to ensure that people with disabilities who live in institutions but are capable of living in the community be served, whenever possible, in community settings. See Olmstead v. L.C., 527 U.S. 581,597-603 (1999) (holding that, under the ADA and Section 504, “unjustified institutional isolation” is unlawful discrimination based on disability).” (Letter from Colleen Miller, Executive Director, VOPA to Dr. James Reinhard, Commissioner, VA Dept. of Mental Health, Mental Retardation and Substance Abuse Services, December 16, 2004, emphasis added).
A majority of the Court clarified its holding with the following statement:
“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings . . . nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” 119 S.Ct. 2176, 2187 (1999)
Olmstead allows (based on choice, professional assessment and availability of services) the provision of training school services for qualified individuals. It should not be the practice, nor the policy, of any publicly-funded organization to exclude support for a certain group of people (i.e., individuals seeking facility admission).
III. Conclusion
Congressional Intent, legislative language, and Supreme Court guidance are consistent and clear: Protection and Advocacy systems are not mandated to transfer all individuals with mental retardation and developmental disabilities from institutional settings. Furthermore, P&A systems are permitted to assist in the admission of individuals to facilities when admission is warranted based on needs and choice.
The only “mandate” that should direct P&A systems’ federally-funded actions is one that is motivated by compassion for its constituency. Those most in need are truly voiceless. They are individuals who live at home with family consumed by care giving, working and raising other children. These families may be living in extreme poverty or in non-English speaking households. These families do not have time and/or ability to attend public comment sessions or even articulate by letter their needs. These are individuals who, through care by loving families, are in very fragile living situations and whose lives could become in crisis at any moment. Feeling beholden to a policy that shuns any residential option without regard to need is inconsistent with federal statute, regulation and case law, and is counter productive to P&A systems’ mission to protect and advocate for all people with developmental disabilities, regardless of ability to attend priority-setting meetings.
For More Information ContactMary McTernan, President
Tamie Hopp, Executive Director
Voice of the Retarded
5005 Newport Drive, Suite 108
Rolling Meadows, IL 60008
605-399-1624 direct
605-399-1631 fax
847-253-6054 alternate fax
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